Pippa's Journey with a Brain Tumour

26h June 2013. Today is 18 months on. Today is one day after Christmas Day. Today is the second Christmas we have made it through. Today is further than doctors had first hoped for 18 months ago. Today Pippa is still here with us.

I’ve collapsed many times in the past 18 months. The first was the first time I was told to be prepared for not much longer than 6 months. The second was the second time I was told to be prepared for not much longer than 6 months. Then there was 1st September when I was told there was nothing more that could be done or tried. There have been times I have been told to prepare myself for the worst in the coming hours and days. I’m not sure what number collapses they have been. For three weeks in a row I crossed my fingers and my heart each day willing us to make it a few more days. My heart is almost permanently collapsed.

Pippa is still here. She ruled the monopoly board again this evening. One day at a time and Pippa is still here. Christmas Day, of course, was a milestone. The next milestone is Pippa’s 11th birthday, but that’s a little way off yet. One day at a time.

Thank you to many many people across the past 18 months……….

Thank you to every single person who contributed to fundraising that occurred in September 2013 helping us live Pippa’s number one dream of visiting the Eiffel Tower in Paris. I made a promise to take her there one day sitting on the floor of the corridor waiting for one of many blood tests. I will never forget that heartbreaking conversation.

Thank you to everyone who has sent a single thought in our direction. Thank you to my many friends near and far, all of their friends and to new people and friends I have met along this journey. Thank you to those across the world who read this blog and think of us. Thank you to friends who drop by, ring, text and message. It all helps keep me standing. Thank you to anyone who has ever put themselves forward to spend some time with or do something for my boys. They are lucky to have so many good men around them who care about their wellbeing. Thank you to all of James, Patrick and Pippas’ friends. Thank you to their school. communities. Thank you to our family.

Thank you to James and Patrick for being the best brothers in the world, giving the best hugs, the best kisses and the strongest support.

Thank you to some of the funds and foundations that have helped catch my tears either down the phone or in person…….

Thank you to the doctors, surgeons, therapists, nurses, and hospital staff who have walked beside us and continue to do so. Thank you to Pippa’s oncologists at RCH and Peter Mac who have done the very best job they could, offered the very best treatment to a virtually untreatable disease and agreed wholeheartedly to do the further unproven treatment when I asked.

Thank you to Pippa who in the past couple of days has shed little tears with me behind the joyous front of Christmas. Thank you for being strong and fighting so hard without ever complaining. Not even once. Thank you for sharing Christmas 2014 with us. Your Presence is our Present. I know you are starting to get saddened by the differences that have taken over your body recently. I am still hoping this extra radiation is working and know that it ,combined with your strength and determination, is the reason we made it to Christmas yesterday. As we reduce the steroids your muscles will grow a little bit stronger for a little bit longer and we can spend more time together. Christmas is over now. Let’s start planning your birthday party. It’s not that far away, February 13th, we’d better start getting ourselves organised so we can look forward to it.

How exactly did we spend today, 18 months after I first heard the words Pontine Glioma? With family of course……A few of the Reas gathered for a family reunion. No better place to be today.

A Gingerbread house was created to share, Pippa received everything she wished for, we have more ways of creating family fun, the Reindeer got up to mischief in the back yard again, Christmas Lunch was shared with family and Pippa’s gifts to us were the most incredible precious treasures ever……….

We have been receiving parcels which is always exciting, some very cute named Christmas stockings are hanging in our lounge room and a magical Christmas tree stands elegantly enticing endless comments from people who see it. On Friday Pippa received another parcel and opened it. Inside was a Christmas Teddy Bear. She aptly named him Santa’s Little Helper or ‘SLH’ for short. Geoffrey, Henry, Monkey and Harold have been carefully put aside to be re-cuddled after Christmas. SLH has constantly been with Pippa since Friday and with him he has brought a little Christmas Hope and his own little magic……….

Santa’s Little Helper

Until Friday Pippa was focussed only on Christmas for everyone else: She had delivered little gifts for her classmates, friends, family and the u18s basketball team. Christmas shopping started on the day of our Christmas Sights Visit in Melbourne when she purchased her first of three gifts for James and Patrick. There are mysterious presents abound under the tree with “Love From Pippa” and by Friday she was completely organised ensuring that everyone around her would have a special Christmas from her.

Then Santa’s Little Helper came in the mail. All day Friday she clung to him. Saturday morning she woke excited. At first I thought she was excited because we had decided we were able to go to our annual extended family Christmas gathering in Anglesea. She was but that wasn’t what she was initially excited about. Pippa needed to get ready for her Christmas. She needed to write her Santa list. Santa was coming in 4 sleeps and it needed to be done. That very minute! The list was typed carefully on the computer, printed, laminated, hole punched, placed in a folder and left under our Christmas Tree. Yes, she’s her mother’s daughter; it was categorised and spaced out perfectly, but just shy of being put on an excel spreadsheet! Only then could we leave for Anglesea – “Dougfest” would be 24 hours of fun with cousins, plenty of food, gifts, our annual raffle and a larrikin Santa handing out presents……… When we arrived Pippa was asked by Chelsea-Lee’s beautiful little face gazing up at her if would please go on the trampoline with her? Pippa said, no she wasn’t going to be able to go on the trampoline today. Later on in the afternoon though she was adamant she was going on the flying fox – and fly she did! Complete with a merry band of followers!

A hug from “Santa”

Santa gets a bit hot under his beard sometimes!

Girls just chatting

Harnessing up

Flying Angel

We returned home to find that not only had Santa been to collect her list, but he had also left her 2 bracelets with magical powers made especially for her by his Elves! Indeed, the magic of Christmas started to spread and Pippa’s face began to beam at the thought of Christmas Eve and Christmas Day.

Carollers rang our door bell last night………

We have done our annual Wishing Tree Shopping from the raffle James started 8 years ago…….

Shopping for the Wishing Tree

Pippa didn’t put a pony on her list, but one turned up for her to ride and pat………

Nice to meet you, Biscuit

Two weeks ago Christmas Day could not come quickly enough. Now Pippa seems a little bit stable, I am continuing to slowly and carefully drop her steroids and 2 days out Christmas is finally within our reach.

It’s now beginning to start feeling a lot like Christmas around here and thanks to Santa and his little helpers Christmas magic is shining through Pippa………

Pippa and I have talked this week about how happiness can come from bringing joy to others – at Christmas time this is an easy discussion to illustrate and have with Pippa – she has been busy ‘bagging & tagging’ some little gifts this week to help bring a little joy to her classmates, friends and family.
Yesterday joy was brought to Pippa. A very kind and generous supporter of the RCD Fund offered to fly Liz & Celia down for lunch and a visit. Wow! The result of that was Pippa got to fly in a helicopter and Liz and Celia got to have lunch at our place and meet Nibbles in the flesh, or rather, fur!
The helicopter ride was put on her happy list the night before along with going to school and seeing Jeff’s husky. We hadn’t really told anyone what was happening but as Pippa’s class wondered why we were leaving school at 10.30 instead of our usual 11.30 I asked her if she wanted to let them know. I am so glad we did!

We went home for Pippa to have a quick rest before Liz and Celia arrived. They were early – how I wish it only took me 60 minutes to get from Melbourne to Warrnambool! The excitement intensified as we spotted the helicopter buzzing ahead of us as we were driving down to the beach – they didn’t have to wait for traffic lights! Special arrangements had been made and the helicopter landed on a grassed area along the foreshore. Pippa, Liz and I went up first and did a flight along the coast and river before turning around to do a fly over Pippa’s school. Pippa was excited. From the distance she could see everyone gathered on the oval. She eagerly gave directions to Mark, “the blue patch over there on the grass is all my school friends!” What she saw was not only her whole school waving, but one class lying down spelling out her name! Very clever, very thoughtful and completely lifting the bar on the excitement level. We could see everyone waving and jumping around watching us as we flew by. She was thrilled and we looped around a second time for another look at her name. If only we had a horn to toot!!!

Thanks Pilot Mark

Getting Ready for Take Off

Thanks for helping Terry

Pippa and Liz enjoying lunch on the ground

A few friends dropped over briefly after school which was terrific – it meant that not only could Pippa relive the excitement of the flight, but she also heard about how much her school mates enjoyed being a part of it as well. They looked at photos and one friend successfully found himself in one of my photos – that in itself was fun. We woke up this morning and she again relived the moment via the front page of the newspaper sitting up in bed reading the article.

Feel Good Front Page Article

It was not so much a wish of Pippa’s that was granted; it was simply the extraordinary generosity of a man who didn’t even know us to fly Liz from Melbourne and do something memorable for a little girl. The added bonus of her thoughtful school community was the icing on the cake making it even more special and personal. Pippa insisted that Liz be in the helicopter with her and me – I am so glad Liz was there to witness Pippa’s reaction as we flew over her school.

When I told Patrick and James that Liz and Celia were flying down to see Pippa, the confused ‘why’ that often comes from teenage boys was answered with, “Why not? Some people get to live for 80 years and still don’t get to fly in a helicopter so in Pippa’s situation why shouldn’t she fly in a helicopter?”

As for what was on our Happy List for today……..it was going to the movies to watch Alexander and the Terrible, Horrible, No Good, Very Bad Day. Such a lovely and fun movie to watch. Perfect for today.

On Pippa’s list of important things one simple word stood out loud and clear – Happy. Being happy, feeling happy, having happy days.

With that in mind, we now have a special nightly routine at bed time. Whilst waiting for me to heat up her “snuggle sacks” (two to keep her feet warm and one to feel cosy on her tummy) and organise medication, eye drops and eye gel, Pippa types up a list of what is happening the next day that will make it a “Happy Day”. We then read through it together. Usually it is some quite simple things: wrapping Christmas gifts, decorating the Christmas tree, going to school for a couple of hours, seeing a friend or a cousin. Even having only one or two things on her list, I explained, could make a day happy – we don’t have to have full days, we just need to enjoy something each day. So far this week each day has been happy for Pippa and somedays surprises have happened or something unexpected has occurred that has added to her happiness.

Some happy times for Pippa…….

Sitting with Nibbles when we first arrived home

Napping with Nibbles

Lunch with a View

A Ballon Greeting Back to School

Our Christmas Tree

All on the job

Getting towed around school by Jeff’s Husky

Lucky we popped into the staff room!

Chloe’s Birthday

School Friends

Of course we could focus on all the negative issues at hand, but when you have to live one day at a time, focussing on happiness is a great way to do it: ending a happy day happily thinking about the happiness that lies in store the next.

Oh, James and Patrick are pretty happy at the moment………they have a very cool “paddock bomb” to drive around in for a little while. Not a bad way for boys to clear their minds for a bit 🙂

If only the internet connection and phone service problems I have had since returning home this week were the only things on my mind leading up to Christmas……..

We completed Pippa’s reirradiation last Friday instead of Tuesday – 15 instead of 17 days of treatment. Her body was tired from the steroids, the treatment and the tumour. Fifteen treatments earlier we were greeted at Peter Macallum Cancer Centre by friends from a year ago with smiles on their faces and tears in their eyes. On Friday we completed our final day and said our goodbyes again to those same friends with the same smiles and the same tears. Now we start reducing Pippa’s steroid dose. Our Peter Mac friends……

Deciding when to actually return home proved rather tricky. Thus, we asked Pippa about things that were important to her and she wrote a list on her iPad. She wanted to spend a day playing games with Julie, Harry and Charlie and then she wanted to go to the zoo but just with James, Patrick and me. Pippa wanted to return home and go to school and see her friends but she also wanted to go to “Liz’s Christmas Party” on Saturday evening. With all this in mind, we stayed in Melbourne until Sunday and returned home with the car full on Sunday evening.

“Liz’s Christmas Party” was the RCD Fund Very Merry Christmas Market Party. Pippa was insistent that we attend and she even made sure that she slept before and after the zoo so that she wouldn’t be too tired to go. Pippa feels a very special bond with Liz and Celia. James and Patrick were slightly less enthusiastic to attend, but they all agreed that the best way to go to a party of people you don’t really know was to “Do a Tony” – smile, be happy and talk to lots of people you have never met before. To try and say that we were all glad we went does not truly reflect how the evening was for us and I really don’t know if, in this case, I can put it into words. We knew Liz and Celia of course, and had met Scott that week when he collected 400 shortbreads from our apartment that my mum had made for the market. Pippa and I had previously met Connor’s bother and sister, Nick and Hannah, once before and of course we both love her beautiful music therapist, Sarah, and Yoga therapist, Patricia. Nothing though had really prepared us for the warmth and love that greeted us; the welcome we received from people who knew of us but didn’t know us. We were taken literally into the embrace and hearts of strangers who made us feel like friends. Pippa was (in James and Patrick’s words) made to feel like the VIP of the party – Very Important Pippa! James, Patrick and Pippa participated by drawing all the raffles which was a very tricky task considering they were actually willing Pippa to draw out their own name! They all felt happy and included. It was an extraordinarily humbling and beautiful evening.